Rheumatoid Arthritis: How to Educate Your Loved Ones

Arthritis Consumer Experts founder Cheryl Koehn explains how to help key people in your life better understand RA.

By Michael Dolan

Medically Reviewed by Alexa Meara, MD

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Friends and family may not understand how to support you until they understand RA.

Ron Levine/Getty Images

The United States Olympian Cheryl Koehn knows all too well the role family and friends can play when a person is battling the symptoms of rheumatoid arthritis. As the founder of Arthritis Consumer Experts (ACE), Koehn has created a network to help inform not only those living with rheumatoid arthritis (RA) on how to deal with the chronic autoimmune disease, but how to educate the people around them. “Family can be your biggest supporters, but also your biggest hindrances,” Koehn says.

Help Them Help You: Informing Loved Ones About RA

“My ex-husband thought hecausedmy RA,” says Koehn, a former elite volleyball player. “It isn’t helpful when the people around you are blaming themselves, because it’s not healthy. Families can really disempower you when they lack motivation to learn about your disease, to actually understand what it is. A person can attend doctor visits and ask questions to better understand a sibling's or parent's or spouse’s disease. When they don’t, it makes it really difficult."

Even Moms May Need Education

"My own mother called me when I moved to Vancouver and said, ‘Do you still have that arthritis thing?’ I had sent her materials to read. She knew that I volunteered at an arthritis charity. She saw firsthand my inability to walk. What she was commenting on was the appearance of normal with an invisible illness. People can’t see the disease roaming through your body.”

Good Help vs. Bad Help: Understand and Communicate the Difference

For Koehn, it’s not only important to understand how to ask for help when you have RA, it’s equally important for others to understand how to offer it.

“There is good help and really bad help,” she says. “And when families don’t understand the distinction between the two, it’s difficult. When I would walk into the apartment with my first husband, I would try to do something for myself. My condition was so bad that it was painful to chew. Food had to be pulped up for me. But you still want to try to do something for yourself. It’s that self-reliance that every person learns from their parents, that you will someday learn to take care of yourself.

"Without asking, he would rip the carrot peeler out of my hand, or pull the refrigerator door out of my hand, which would really hurt me physically. Good help is about learning how to ask for help if you are the person living with the disease or how to offer it [when you're not]. When people can master that, it creates a whole new dynamic for a family.”

Koehn believes it's best to offer help first before taking over an activity. "You need to allow a person their independence, and there are times when it can physically hurt if you take something out of the hand of a person with RA."

Different Abilities: Explain Your Limitations

“I’ve always been an athlete, and I still enjoy living a very active life,” Koehn says. “I just spent a week with my closest girlfriend, and she suggested that we go hiking. I was able to hike at the same pace. My knee is a bit rickety from my volleyball career, but I gritted out the last 20 minutes of the hike. Then she suggested, ‘Let’s go bike riding for a few hours.’ Well, I’ve had surgery on my back, so being bent over on a bike for four hours isn’t good for me. In her mind, riding a bike is easier than hiking for two hours, but it isn’t for me.

"This disease confounds people, because you can do Thing A, which society sees as difficult, but you can’t do Thing B, which is supposed to be much easier. But those are their metrics, not mine."

For example, Koehn has found ways to build up her grip so that she can play tennis, but shoulder surgery has limited her range of motion. "So I tell my tennis partner, if the ball goes in this area, it’s yours. [Laughs] Those are the things we do to adapt our lives. It takes some measure of literacy to not only understand it, but to explain it to others.

"Now that I’m older, I’m far more open about what I can and can’t do, and I will let people know. If they’re going to say it to me, they’re going to say it to people who aren’t as equipped to have those conversations about their health as I am." Koehn hopes that with a little guidance, everyone can keep an open dialogue about RA.